Dramatic growth in mental-health apps has created a risky industry

Note that I’m not denying that people might have mental illnesses that have deep rooted or physical causes that _need_ therapy or medication in order to live a fulfilling life.

And from the article, people who can't afford their product describes a lot of people:

> So she joined BetterHelp, a popular therapy app. She paid $65 each week but spent most of her time waiting for her assigned counsellor to respond.

Which results in practitioners giving a diagnosis immediately based on “I think you might have this, so let’s connect you with a psychologist/etc to dig deeper and find out”.

That’s simply the bureaucratic path through the system.

But my concern is that patients looking for an answer hear, and identify with, “I have xxxx, that explains it!!”

When you also take into account that some symptoms are comorbid, and may entirely disappear upon the underlying issue being resolved or managed.

And that’s just the bureaucratic incentives. I’m unclear on the professional & revenue incentives for diagnosis and referral to other professionals, possibly within the same umbrella organisation.

Hyperbole aside, access to mental health services isn't going to invent mental health issues for most people. There's an extremely large underserved population without access to any mental health services. And even with access it can take months to get an appointment.

The services need to be as highly regulated as offline mental health services to protect patients. Besides that, it's a many times over net positive on society if people get the help they need.

It's a net positive even if a few people need attention and get that by faking or acting out a mental health disorder.

That being said, I imagine that same idea comes into play in most service-related fields that are trying to solve a problem: consulting, law, healthcare, and more. But maybe it feels more scary because with emotional health, it can cut deeper than most consulting gigs.

And thank goodness they are getting more people in. The biggest problem in mental health is that the majority of people who need help don't get it.

> Mental health issues can spread socially

No they can't. There is zero evidence that you can get clinical depression, bipolar disorder, schizophrenia, borderline personality disorder, or anything else serious socially.

Not saying that solves it, I just don't see why would apps worry you particularly much in context of issues you're pointing out.

Is there actually research showing that mental illnesses spread through social groups?

Something I see happen all the time:

1. Organization hoovers up data incidentally as they build a product.

2. Privacy concerns are raised internally, but the organization genuinely has no intention of misusing the data so concerns aren't taken seriously and they're not addressed.

3. Some years pass (sometimes only one or two).

4. Newcomers to the organization now start misusing the data because, hey, it's there. If you have it, why not use it?

We have also had legal consultation on this due to the continuous pressure and can confirm it is not legally required to share your data to the employer at-least in the EU.

Question: With all the industry wide bad practices, how do we convince you that we don't share your data with your employer?

Even doctor's offices do this now. I've been to a few that ask you to sign away your rights to privacy so that they can sell your medical information to their partners. It's gross.

They also expect vulnerable populations of people with untreated/under-treated mental illness won't advocate for themselves as much as other populations, and they're probably right. It's gross.

With regard to your experience with Talkspace, consider reporting them to your state's consumer board and Attorney General.

I used to use whiskey for this when the pain became unbearable. Would take half a shot, then invert and tilt my head, letting it sit for a minute on one side of my upper jaw. Sometimes I'd spit if there was a lot of blood. Did the trick though, was usually enough relief to get me through until the toothache went away.

For a time I probably had more alcohol intake from that then I did actually drinking, despite it being a seldom occurrence.

Note: I say this being fully aware of how dangerous some types of untreated toothaches can be, so if you can afford care, get it. It might save your life.

I'm not saying that an app, or technology in general, can fix everything, but surely we can drum up some sort of support tool that doesn't leave people high and dry, and doesn't rely on an impossible scaling up of a limited supply of skilled professionals doing 1:1 therapy. I'm not saying you can ever replace 1:1 therapy or even in-person therapy, because I don't think that's how we've evolved to need care, but I know that there is research to support that meta-level awareness of your own mental health is an important step.

There's (probably) not a silver bullet tech solution out there, and I think it's frankly a minefield and a losing battle for most startups, but definitely for investor-backed startups. I think this space really needs open standards and privacy-first solution that keeps people in charge of their own data, while also giving better tools to the experts who are out there now, and enables at least a minimal level of several options for therapy (self-led, group, facilitated, etc) for the varying levels of need, to free up 1:1 sessions for those in the greatest need rather than just the highest bidder as capitalism often favors.

[1] https://www.nytimes.com/interactive/2021/12/16/well/mental-h...

I asked the first one about his fee. I went in not knowing. I had this horrid anxiety that just wouldn't go away. He says, "pay me what you think I'm worth."

I was in such angony, but did't want to piss this guy off. He had a good reputation. He offered no medication, and had this rediculious theory my anxiety was post traumatic syndrome from the '88 earthquake.

Anyway ge told me his fee was $450.00. I paid it and left.

I saw a Phd. Psychologist I found in the yellow pages. I talked and talked. I cried, and cried. Nothing was stopping the daily anxiety.

I ended up finding a Psychiatrist who didn't rape me on price. He put me on two very addictive drugs, and I've been on them decades. The mandatory appointments are tedious. I get absolutely nothing out of them. I've been on the same dose, so I think i'm just addicted, and any perceived pharmaceutical help is placebo.

Anyway--unless you hear voices (really bad voices that are bothering you greatly I added that tidbit about voices because they found schizophrenics do better long term without meds), or ready to commit suicide; I would stay away from the entire profession.

Oh yea, in your twenties and thirties, they are rough decades. If you don't bust a gasket consider yourself lucky.

If I had a do over, I don't think I would have ever seeked help. It's kinda a joke. It's definitely an art.

maybe things have changed since but I didn't see much incentive for the researchers involved to compare the long term effects of this form of treatment to other options or stop and wonder about the implications, although I'm certain some would like to given a different funding landscape

In the end the end users would be worse off with the alternatives as you say. However you mentioned it wasn't the only reason. And of course litigation is a danger with these things.

Sometimes, it's a good idea to keep things off computers, unless you can be sure of the quality and security (which is a challenge. Everyone says they are "secure," but we keep having clusterf**ks like this).

As a matter of sales tactics, if you even remind them of the concept of privacy, they're less likely to buy.

You want the buyer to imagine an idealized future in which their desires are realized.

Very hard to sell on the vague promise that you're less untrustworthy than all the others in this very untrustworthy industry.

Me too. I struggle to understand why most communication platforms don't try to do end-to-end encryption. From what I've seen, it can one, be a lot more complicated technically and two, hard to make a user experience that people enjoy. However, I don't know if people starting companies think enough about the ramifications of knowing (and storing) what people are saying to each other, legally and emotionally.

I've been wanting to do more work online, especially over the pandemic, helping people express emotions and I've often balked at platforms because they don't have e2ee or they say they do and then are found out to not have it (ie Zoom). Most people may not desire this, but as someone who wants to run classes and have conversations about deep emotions, I strongly want almost all of the platforms to be e2ee. I would love gather.town, Discourse, Discord, Guilded, Clubhouse, and many other communication platforms to have e2ee as default.

I want this for personal conversations but I strongly want/need this for professional conversations, and because it hasn't really been there on many of these platforms, I've just not had those conversations.

The data in a therapy app can be considered part of a clients medical file and the medical file has various compliance regulations affecting it e.g the data has to be accessible for the organisation for 15+ years.

This has created a structure making E2E almost illegal in some healthcare domains as the policy ensures that the client data can be accessible to future therapists and accessible to the organisation under catastrophic scenarios.

Only the app being E2E enabled is half the picture, the regulation has to either change or the compliance to the regulation by the mental health organisation has to be creatively done to ensure a complaint E2E implementation.

This makes it a bigger, costlier problem than making therapy more effective and hence a ton of hesitation as unfortunately you don't 'need' to do it.

While that little notification hijacking didn't seem to help much, the app I built for journaling really helped me get more in touch with how I was feeling and feel more confident in my ability to express it.

(And not "how did we do?" email surveys which mean "punish the call handler for anything less than 5 stars")

Tracking my anxiety with Daylio has really helped as well. Gives me much better metrics for how my anxiety changes over time and with different medications. Hardest part has been keeping the scale consistent even when my baseline amount of anxiety seems to change.

I am the mental health app. Please, describe your problems. Each time you are finished talking, type RET twice.

Technically untrue, but true nonetheless.

There are a lot of techniques for ensuring the security of data. Techniques where even the supplier of the service cannot access your data.

But they do not add (in the general case) to the bottom line.

In another generation (or two) users may get educated to insist on it. But for now the refrain "I have nothing to hide, why should I care about privacy?" is very common.

My reply is "you have nothing to hide, now. When you do it will be too late".

I have a lot of empathy for Cassandra!

Selling data from therapy sessions to advertisers is downright abusive!

Personally, after an initial good experience with BetterHelp, and then a hiatus, I had to stop using them because all of their therapists became evangelists for Critical Theory and were literally telling me that I ought to feel guilty for my race and gender, and work to atone for it. To be fair, I think this is a bigger probelm with the APA and not BetterHelp specifically. But a therapist who cannot abstain from judgement should not be a therapist.

cough how many? jeebus, that's a lot of these kind of apps. just kind of goes to show there are too many apps.

It will, but it takes a while. So far, medical apps where basically ignored by regulation, but that is about to change. In Germany, you can now register apps as "digital health apps" with regulators [1]. This created a new market, because now the app can be paid for by insurance policies. Hence, most apps already approved are in the "mental health" category and charge about €2,000 per year. Cheap compared to traditional treatments, expensive for a consumer app.

This has benefits and downsides.

Main benefits: Apps must comply with regulatory affairs. There must be data to support that the apps work as advertised. App developers must think about risk for the user/patient and how to manage it.

Main drawbacks: Considering the replication crisis in psychology, there is incentive to create weak evidence. Apps can claim to work, because they did a bunch of studies, but in reality, the app is useless. Since customers don't have to pay for them, but insurance companies do, there is less pushback from actual customers. Why would they care about a free product not working as advertised?

So far, this is something within Germany. I can imagine that other countries will follow. Add the new Medical Device Regulation (MDR), which harmonizes medical device regulations within the EU. The next step will be some global harmonization and thus, enabling these kinds of new markets for prescribed apps.

[1]: https://www.bfarm.de/DE/Medizinprodukte/Aufgaben/DiGA/_node....

Not necessarily, HIPAA applies only to "covered entities"

https://www.cms.gov/Regulations-and-Guidance/Administrative-...

>Providers who submit HIPAA transactions, like claims, electronically are covered.

If you aren't doing any sort of "transactions" (ie not submitting insurance claims) then you don't have to comply with HIPAA - even if you are providing health services and are storing and processing health information.

The "I" in HIPAA stands for "insurance," as a general rule, if an insurance company is never involved HIPAA probably doesn't apply.

HIPAA is extremely misunderstood, people think it is a general medical privacy law, but it is not, it's a law that regulates insurance companies.

HIPAA is significantly more limited than most people think. Basically, if insurance isn't involved than HIPAA isn't legally required.